What Matters Most? An Exploration of Quality of Life Through the Everyday Experiences of Autistic Young People and Adults

Background: The quality of life (QoL) of Autistic people is consistently reported to be poor compared with the general population. Little is known, however, about how Autistic people experience QoL from their perspectives and the ways they would like it to be enhanced. This qualitative study, conducted in collaboration with Autistic people, sought to understand how Autistic young people and adults define a good life and what helps and hinders them from achieving a good QoL.Methods: We conducted semi-structured in-depth interviews with 34 Autistic adults and 14 Autistic adolescents about their everyday life experiences of different aspects of QoL, including physical health, sensory needs, mental health, money, home, transport, leisure, social connections, acceptance, and inclusion, being in charge of one's life and perceptions of the future. We coded transcripts in NVivo and analyzed them using reflexive thematic analysis.Results: We identified four themes: two themes that described what a good QoL meant for our participants along with aspects of their lives that facilitated a good QoL: "feeling good" and "being myself in the world"; and two themes that described barriers to achieving a good QoL: "exhaustion and overwhelm" and "negative experiences shape perceptions."Discussion: These findings highlight the need to consider Autistic people's QoL within the context of their everyday realities. Enhancing QoL will only be achieved through focusing on these realities and through the provision of adaptations and supports to create more inclusive environments. Community brief Why is this an important issue? Previous research has found that Autistic people have a poor quality of life. However, most of this research has been based on what non-Autistic people think a good quality of life looks like. If we want to improve the lives of Autistic people, we need to know what a good life means to them and what helps, or stops, them having the lives they want. What was the purpose of this study? The researchers wanted to hear about the day-to-day experiences of Autistic people so that they could better understand what is most important to them and how to find ways to help them have a good quality of life. What did the researchers do? The researchers conducted interviews with 34 Autistic adults and 14 Autistic adolescents about their everyday experiences. They asked about their health, mental health, work or school life, relationships, and hopes for the future. The research team included Autistic and non-Autistic researchers. These interviews were online or via written responses depending on what participants wanted. What were the results of the study? We looked at what participants told us and found four ideas or "themes." Two of the themes described what a good quality of life meant for our participants and two were about aspects of their lives that led to poor quality of life. Our participants told us that their quality of life was positively influenced by feeling good about themselves and being accepted for who they are. They also told us that everyday life, like doing domestic chores, dealing with challenges with sensory information and social situations, led them to feel exhausted and overwhelmed, and made their quality of life worse. They felt that acceptance of the ways Autistic people choose to live their lives would improve their quality of life. What do these findings add to what was already known? This research adds to our understanding of Autistic people's quality of life from their perspectives. It emphasizes the need to shift away from preconceived notions of a "good life" for Autistic individuals, particularly in terms of work and relationships. The study also provides new insights into why Autistic people might experience challenges and value various aspects of their everyday lives. What are potential weaknesses in the study? This was quite a small group of Autistic adults and adolescents, all of whom lived in Australia and where most adolescents were male. How will these findings help autistic adults now or in the future? By better understanding the quality of life of Autistic adults and adolescents, services and supports can be designed to help Autistic people achieve personally meaningful life goals.